Illness perceptions and quality of life amongst women with pseudotumor cerebri

Background and purpose: Pseudotumor cerebri (PTC) is a disorder of increased intracranial pressure without evidence of a space occupying lesion. The purpose of this study was to assess the subjective perception of PTC and its association with stress, anxiety and global quality of life (QOL). Methods: Fifty-eight women diagnosed with PTC completed questionnaires measuring their subjective appraisal of PTC and specific perceptions of the symptoms, causes, consequences, timeline, controllability and their anxiety, perceived stress, and QOL. Results: Appraisals of the condition were mostly of loss or threat and those were related to greater anxiety, stress and poorer QOL. Negative perceptions of PTC were related to greater anxiety, stress and poorer QOL. Most of the women attributed their condition to their weight, but adjustment for body mass index ruled out weight as accounting for the findings. Women attributed to the condition symptoms likely to be related to PTC as well as others that seem unrelated. Conclusions: Our findings underscore the importance of assessing women's subjective perceptions of their condition as a factor related to their levels of anxiety and stress as well as to their QOL. Accurate symptom diagnosis and treatment as well as psychosocial support could assist women who are coping with the burden of this condition and possibly improve their QOL.